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Welcome to Inspire!
What - Inspire is a place where you can connect with people who share your health concerns and find information and advice in groups sponsored by organizations you know and trust.
Why - As a member you can use Inspire to let friends and family know how you're doing, contact others who share your health concerns, receive personalized updates and information about participating in surveys and clinical trials, and more.
How - Joining Inspire is completely free and usually takes less than a minute. Join now!
Discussion topics
Getting a diagnosis
Share your own experiences with getting to a diagnosis. What symptoms did you first experience? How can your own experience help others to get an earlier diagnosis?
Television exposure
- By eramsteven · New reply 3:16 pm
- 3 replies
- Just to let you know that VHL was mentioned on the ABC show, Private Practice last night. It had to do with preimplantation genetic testing of embryos with dwarfism. The doctor wouldn't implant becuase ...
All 142 discussions...
How my diagnosis changed my life
How has VHL changed your life? Share your story with other community members, and offer your support and advice here.
enucleation and social security
- By joy54 · New reply August 13, 2009
- 4 replies
- Hello, I have been diagonsed with ocular melanoma and have made the decision for enucdleation when the time come. (Probably real soon). I'm visiting the University of Ann Arbor for this condition. Has ...
All 16 discussions...
Financial and insurance issues
VHL can be a strain on anyone's budget. Here is a place to share ideas for managing finances and dealing with insurance.
GOVERMENT RUN HEALTHCARE
- By Rick · New reply November 5, 2009
- 18 replies
- I was diagnosed with VHL in 1980 and have had a total of 23 tumors either removed with conventional surgery or otherwise taken care of (radiosurgery). I am wondering if anyone else out there is concerned ...
All 25 discussions...
Parenting issues
Having kids? Informing your kids? Helping manage your children's health? Parents share experiences and support one another here.
Tumor growth in young children
- By BriannaB · New reply October 23, 2009
- 8 replies
- My husband has VHL and has had 4 Brain operations to remove them. We are awaiting test results on our two children. Because of it DNA testing it takes way longer then your standard blood test, so were ...
All 14 discussions...
Kids and teens
Young people with VHL have questions and concerns. Share your experiences dealing with your parents, your brothers and sisters, your friends, school, etc.
Child with VHL
- By twebb0506 · New reply September 16, 2009
- 5 replies
- My 12 year old daughter has VHL and has had multiple laser surgeries to remove a tumor from her eye. She has also watched her Father suffer and pass away from VHL. Passed a year ago July 16th. She has ...
All 16 discussions...
Tips for caregivers
Caring for and about someone with VHL has its joys and frustrations. Share your experiences and get support if you are a caregiver yourself, or if you want help taking good care of your caregiver.
Any spouses/significant others of VHL patients here?
- By Michelle76 · New reply October 10, 2009
- 13 replies
- I don't know if this discussion board is mostly for patients, but I've been really stressed lately, and a friend found the site for me and told me I had to join or she was going to email someone for me ...
All 7 discussions...
Finding emotional support
Anxiety? Depression? Fear? Discuss how your diagnosis has made you feel and offer or ask for support here.
Waiting
- By rocksea · New reply November 2, 2009
- 3 replies
- My mother was diagnoised with 2 brain tumors in June. She lost an eye to VHL in 1963 and is blind in the remaing eye. She has also lost one kidney and part of another to VHL. She is having major balancing ...
All 73 discussions...
Finding a doctor
Discuss your experiences with healthcare professionals. Help others ask the right questions when seeking help.
Poster child for seeking a second opinion
- By JennyBlue · New reply October 14, 2009
- 3 replies
- I just want to encourage EVERYONE, no matter what diagnosis is to seek a second,third, fourth opinion. I have family history of VHL. From paternal grandfather, three of my father's siblings plus him ...
All 37 discussions...
Health management issues
With early diagnosis and better management, people with VHL are living longer and staying healthy longer than ever before. This is a good place to share what you have found helpful in your own life and family, and to ask for hints.
Cyberknife brain surgery
- By Raeanne · New reply 2:41 pm
- 26 replies
- Has anybody else experienced complications from cyberknife brain surgery? I had the procedure done in August of last year and unfortunately, I've become ill from radiation induced swelling of the tissue ...
All 133 discussions...
Medical treatments that worked for me
Discuss your experiences with medical treatments.
after virtrectomy surgery
- By pupa · New reply November 2, 2009
- 2 replies
- 6 months after virtrectomy and all was going well, bingo, I started to experience floaters, the drs say that it could be membrane peelng and they will follow up but the floaters are how last year the ...
All 48 discussions...
First in the family: mosaic?
Mosaicism is a rare configuration of the DNA. It only affects a fraction of 1% of the people with VHL, but it always raises lots of questions. If you have a DNA diagnosis of VHL, even if you are the first in your family, this does not apply to you. If one of your parents has VHL, this does not apply to you. It only applies if it has been suggested to you by a geneticist or genetic counselor.
vhl
- By ireland22 · New reply March 13, 2009
- 4 replies
- I along with 8 others in my family have vhl , my sister is the only one who has not the gene, what im asking is , cause she has a child , would the child need to be tested for vhl ...
All 11 discussions...
Fundraising and raising awareness
Share fundraising ideas as well as suggestions for ways we can increase awareness of this often unrecognized and misdiagnosed syndrome, Von Hippel-Lindau (VHL).
VHL and Livestrong
- By lifeandhope · New reply October 28, 2009
- 5 replies
- Great news about Livestrong adding VHL to it's dropdown box of types of cancer!!! This is great exposure ...
